After more than six years of refining its approach to engaging partners with lived and living experience (PWLEs), CHILD-BRIGHT has formed strong relationships with youth and parent research partners from diverse backgrounds across Canada. In turn, our research partners have become experts in consulting with patient-oriented research projects focused on childhood brain-based developmental disabilities.  

The CHILD-BRIGHT Lived and Living Experience Consultation Service leverages this shared capacity for researchers external to CHILD-BRIGHT looking to incorporate PWLE perspectives into their research projects.

What consultation options exist for researchers?

Three options are available to researchers, in English and in French:

  • Teams looking to incorporate the perspectives of youth living with a brain-based developmental disability (ages 16-29) will be invited to work with our National Youth Advocacy Council (NYAC). CHILD-BRIGHT’s NYAC, composed of youth members with lived and living experience of a brain-based developmental disability, has provided a consultation service to Canadian researchers working on childhood disability research projects since 2021. Learn more about the NYAC’s past consultation work.

  • Teams looking to incorporate the perspectives of parents, caregivers, or family members (ages 30+) of a child living with a brain-based developmental disability will be invited to work with the CHILD-BRIGHT Engagement Council: Partners with Lived and Living Experience (EC: PWLE). The EC: PWLE is primarily composed of parents of children with brain-based developmental disabilities and other knowledge users. Since 2016, it has provided guidance on embedding parent, family member, and caregiver research partners in all network projects and activities, to ensure authentic and meaningful engagement. In 2023, CHILD-BRIGHT opened up this consultation capacity to research teams studying childhood disability across Canada. Learn more about the EC: PWLE and its areas of proficiency.

  • Finally, teams may also consult with both NYAC and EC: PWLE members, depending on their needs.

How does it work?

    1. For a consultation request, researchers must submit a request to engagement@child-bright.ca. We will then schedule an initial phone or Zoom meeting with you to gather more information on your request.

    2. Applicants must fill out this questionnaire, either by email or over the phone. CHILD-BRIGHT will assess the completed questionnaire and may request further information or clarification. We will then decide which partners are best suited to provide the consultation with the researcher(s) in question. If you are looking to consult with partners with a particular lived or living experience, they will decide among themselves who would be the best fit.

    3. Once CHILD-BRIGHT is satisfied with the project’s fulfillment of their decision-making criteria (see below), we will move forward with the consultation. At this time, you will be asked to fill out and sign an agreement stipulating the payment terms for the service and requiring acknowledgment of the CHILD-BRIGHT Lived and Living Experience Consultation Service in any of the project’s reports or associated publications. The rates for this service will be agreed upon with CHILD-BRIGHT beforehand. The total fee will vary according to 1) the number of partners involved in the consultation, and 2) the number of consultations required.

  • Decisions will be made according to the following criteria:

    1. Whether the main participant population of the study are children and youth with brain-based developmental disabilities.

    2. Whether the partners believe that their input can have a meaningful impact on the research study.

    Please allow for two weeks following questionnaire submission to receive an answer.

  • Each consultation will be one (1) hour long. You may request multiple consultations.

    Please come prepared with materials and content to be discussed with the partners. These should be sent to engagement@child-bright.ca least one week prior to the consultation.

    1. Your research questions for the partners(s).

      i) To maximize the benefits drawn from the consultation, we highly encourage researchers to prioritize the questions or issues they would like members to consider during the consultation.

      ii) Researchers are responsible for taking their own notes and/or minutes during the consultation meeting(s). These should be recorded and shared with members after the meeting(s) to ensure accuracy.

    2. Accommodations material, including translations of the researcher’s questions, notes and other consultation materials. CHILD-BRIGHT is available to support the creation of these materials and will share them with the partners ahead of the meeting, so they can fully prepare and participate in the consultation meeting(s).

  • You will be asked to provide a testimonial (written feedback) two to three months after the consultation that indicates:

    1. How the consultation led to changes within the research study

    2. Why feedback was not used, if the case may be.

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The CHILD-BRIGHT Network is supported by the Canadian Institutes of Health Research (CIHR) under Canada’s Strategy for Patient-Oriented Research (SPOR) Initiative.

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