All in-person data collection for FEHNCY is currently on hold to comply with the physical and social distancing recommendations issued by the provincial and federal governments. The FEHNCY team will be conducting remote only data collection in the Winter and Spring of 2021 and will continue modifying the project methods, timeline, and protocols in collaboration with First Nation partners to adapt to the current circumstances. The mobile clinic component has been postponed until further notice.

FAQ

The Impact of COVID-19, precautions and protocols

Q. What measures are being taken to prevent the spread of COVID-19 in my community?

A.

We recognize the many and unique challenges that First Nations are facing as a result of COVID-19.

A decision was reached in March 2020 to postpone FEHNCY data collection with participants in accordance with health and safety guidelines. Following consultation with community partners, a phased approach to recommencing FEHNCY activities started in November 2020, beginning with remote interviews with local food experts conducted by phone or online platform only

FEHNCY will put in place all necessary measures and protocols- in accordance with federal, provincial and local health guidelines- to ensure the health and safety of each Nation and the FEHNCY team. We are committed to engaging and communicating with First Nations partners as conditions change and additional guidance is issued, and we will continue to remain flexible, incorporating recommendations and adapting to new realities to meet the unique needs of each community.  

What is FEHNCY?

Q. What is the purpose of the FEHNCY Study?

A.

The purpose of this study is to describe the overall food access, nutrition status, housing conditions, and respiratory health of First Nations children and youth living on reserve. The long-term goal is for the study results to inform federal and provincial/territorial policies and programs to address the needs of First Nations children and youth.

Q. Who will be involved in the study? Who is the study about?

A.

FEHNCY focuses on children between the ages of 3-19 years living on-reserve. Children/youth will be randomly selected to participate in each community (see Participation and Random Selection below). Different members of the First Nation will be directly involved in the study, including community researchers and local housing inspectors who will conduct the survey. We will also seek input from local experts on traditional foods and store-bought food and we will hold a mapping activity and focus group with children and youth to understand their food practices and experiences. We will establish Community Advisory Circles to guide the study activities in each community. Everyone will be invited to an opening ceremony when FEHNCY begins, to information sessions about the study, and to community workshops to interpret community-specific findings. We will work closely with community partners, including the local Health Centres and Chief and Council, and others depending on the context of each First Nation..

Q. Where will the survey be done?

A.

In each Assembly of First Nations (AFN) region (BC, AB, SK, MB, ON, QC-Labrador, Atlantic, the Yukon and NTW) (see map), over the course of 11 years, 3-9 First Nations communities will be randomly selected by Statistics Canada and the First Nations Information Governance Centre to participate each year. This selection process will ensure that remote and non-remote First Nations are represented, as well as small, medium, and large communities.

Q. Who are the study partners?

A.

Our study partners include each participating First Nation, the Assembly of First Nations, the University of Ottawa, Université Laval-CHU Québec, Université de Montréal, Health Canada, and McGill University.

Q. How is the study funded?

A.

FEHNCY is funded by the First Nations and Inuit Health Branch (FNIHB) of Indigenous Services Canada.

Q. What are the benefits of FEHNCY?

A. How will this study benefit the participating First Nations?

The results can be used to advocate for better living conditions, community-based health programming, and changes to national and regional policies and programs that support First Nations health and environment, as well as provide capacity building and knowledge exchange opportunities. Findings can be used in the future to see if things have changed over time, or to determine how First Nations on-reserve compare to those in other regions and to the broader Canadian general population.

B. How will this study benefit my children if they participate?

By knowing more about children’s health status, families can be informed about how well their children are growing and request health interventions from local healthcare providers where needed. Also, because youth in your First Nation will be directly involved in community research activities such as group discussions, they may think more about where food comes from in their First Nation and see how their input and suggestions can make a difference to improve the study, while learning about the research process itself.

C. How does this study benefit me or my community if we are not selected to participate?

These results will be used to advocate for additional policy and programming to address the needs identified in the survey, so your household and community can benefit even if you are not selected to participate.

FEHNCY promotes the improvement of health and wellbeing for all First Nations families, not only those who have been randomly selected to participate. The study is designed so that results are representative of First Nations at the regional and national levels. This means that even if your First Nation is not selected, regional results should reflect many of the realities in First Nations of similar size and location to those selected. At the household and individual level, this means that even if your household or child is not selected, community-specific results should represent the situation in your community overall.

Participation and Random Selection

Q. Can I participate in the study?

A.

Everyone in the community has an equal chance to participate in the study however only households that are selected by chance from the community housing list will be invited to participate in the housing inspection and questionnaire. Within each randomly selected household, one child between the ages of 3 and 19 years old who self-identifies as First Nation and has lived in the community for 12 months prior to the survey, will be randomly selected and asked to participate in questionnaires and mobile clinic activities.

Q. Is there any reason why someone can or cannot participate in the study?

A.

Due to the fact that blood markers of anemia, diabetes, immune system function, and levels of contaminants are not as reliable during pregnancy, female youth who are pregnant are not eligible to participate.

As well, anyone who has active tuberculosis or another highly contagious illness, or if they have tested positive for, have symptoms of, or have been exposed to someone with COVID-19 within the previous 2 weeks, will not be eligible to participate.

Q. What if my child or I don’t want to participate?

A.

You and your child’s participation is completely voluntary and you can withdraw your participation at any time.

Q. How can I be involved if my First Nation is not selected?

A.

FEHNCY can still benefit you and your community even if you are not selected. (See question: How does this study benefit me or my community if we are not selected to participate). You can be involved by sharing information about FEHNCY, before the study is in your region and neighbouring First Nation by telling people about the study and what your community may learn from it. Share the FEHNCY website that links to many different resources; and share these FAQs. Share this information with your immediate and extended family and community networks so they see how it can benefit the community and share the results widely once they are published. You can ‘Like Us’ or comment on Facebook, provide the community with updates, invite the FEHNCY team to visit to present the results. We are always happy to answer your questions and learn about the unique circumstances in your community. Click here for how to contact us.

Q. How will the participants be compensated for their time and commitment?

A.

After each visit, the child, the caregiver and the head of the household will receive compensation for their time and commitment.

  • Food and Nutrition Questionnaire: $15 compensation will be given to the participating child and $15 will be given to their guardian.
  • Housing Inspection and Indoor Air Quality: $15 compensation will be given to the homeowner.
  • Mobile clinic: $20 compensation will be given to the participating child.
  • Interviews with community food experts: $50 compensation will be given to the interviewee.
  • Mapping and group discussions with children/youth: 10$ compensation will be given to the participants, and they will be eligible to win a door prize worth 100$.
Q. What are the inclusion criteria?

A.

Children between the ages of 3 and 19 years old who self-identify as First Nation and have lived in the community for 12 months prior to the survey.

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Community Engagement and Data Collection

Q. When will we first meet the FEHNCY team? How does the partnership begin?

A.

Once a First Nation has been randomly selected, a letter will be sent to the Chief and Council to invite them to attend an information and planning session with other selected First Nations in the region. Principal Investigators (research experts) will also be present to describe the study, answer representatives’ questions, and learn about the community interest and key partners and champions to engage. If the Nation leadership agrees to participate, they will sign research agreements to support community participation and foster collaboration. This will be followed with a series of community engagement activities.

Once the research agreements are finalized, FEHNCY will establish a Community Advisory Circle (CAC) to guide the study activities using local protocols and provide community context. The Community Engagement Coordinator and Community Research Manager will work closely with the CAC and plan outreach and engagement activities in each community. Community engagement will be customized to each community but will include an opening ceremony and community feast to introduce the FEHNCY study and begin the studies in a good way. After the opening ceremony, the FEHNCY study activities and data collection will get underway. A closing ceremony will mark the end of local data collection, with the commitment to return with preliminary community results for community input.

Q. How long will FEHNCY be in my community?

A.

If your community is randomly selected and agrees to participate, we will work with community partners for 3-6 months to build relationships and prepare for work in each community.  Study activities will take place for 6-9 months in each participating First Nation. Community members will primarily be working with community researchers and local housing inspectors who are from the local community, along with regular visits from the community engagement coordinator, research coordinator, and principal investigators.

Note: No one from outside the community will enter the First Nation while COVID-19 restrictions are still in place. See section about COVID-19 protocols.

Q. Who will be collecting the data in my community?

A.

All data will be collected by a team who are recruited from each participating First Nation, including a Community Research Manager, Community Researchers, and Housing Inspectors. A Community Research Manager (CRM) will act as the main liaison between the project researchers and the community. Their responsibilities include presenting regular updates at community meetings, carrying out interviews with local experts, as well as planning mapping activities and focus groups with youth. The CRM will lead a team of 2-3 locally-recruited Community Researchers (CRs) who will be responsible for conducting the questionnaires, interviews and focus groups. CRs will also be part of the team of researchers in the mobile clinic. Members of the community will also be hired and trained as housing inspectors and will conduct home inspections, as well as install indoor air quality monitors, radon detectors, and other instruments to measure levels of contaminants and mould in the home.

All of these community researchers will work in close collaboration with the FEHNCY team of academic researchers who have dedicated their careers to collaborating with Indigenous communities.

Q. How will we be incorporating First Nations knowledge into the FEHNCY Study?

A.

Including local knowledge in FEHNCY is a vital part of the project. The FEHNCY team works with local partners in a variety of ways including collaborating regularly with the community research manager and community researchers. To ensure First Nations knowledge is integrated throughout the project, a community advisory circle is formed in each participating First Nation. Specific research activities that incorporate First Nations knowledge include interviews with local food experts (including traditional foods), and mapping and group discussions with youth. An Advisory Board that comprises key regional and national First Nations representatives, is consulted twice a year to ensure that knowledge from a range of First Nations perspectives is also factored into the project.

Q. Who will be invited to participate in Interviews?

A.

Community members who have thorough knowledge regarding the traditional and retail food system and environment will be interviewed. They will be contacted by a FEHNCY team member to gather knowledge about community members’ access to traditional, store-bought and alternative food sources.

Q. Who will be invited to participate in group discussions?

A.

Groups discussions will be conducted with children and youth aged 6-19 who volunteer to participate. They will be asked their perspectives about the foods available in their community through participatory community mapping activities.

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The Mobile Clinic

Q. What will be done at the mobile clinic?

A.

*note: this component has been postponed under COVID-19 restrictions

Children who agree to participate will be asked about their general health, injuries, as well as mental health and substance use (for youth 12-17 years old). To understand about the growth and development of First Nations children and youth and to assess nutritional, health status and environmental contaminants exposure, the FEHNCY study will measure height, weight, waist circumference, body composition, blood pressure, and lung function and well as collect samples of urine, hair, and blood.

Q. Is it safe to give blood samples?

A.

The clinical portion of the study, including blood collection, will be conducted by medical professionals in collaboration with each First Nation’s Health Centre (or equivalent). Discomfort for the child will be minimized by using a butterfly needle and only two attempts will be made before choosing not to collect a sample. If the child/youth participant or their guardian do not wish to provide a blood sample, no blood sample will be collected.

If appropriate and approved by the Community Advisory Circle, the research nurse will conduct a small “Honouring Ceremony” to acknowledge the child’s bravery, courage, and contribution to the research. Members of the FEHNCY Mobile Clinic team will be available to ensure the wellbeing of all participants, and water and snacks will be available at all times for participants.

If you have any specific concerns regarding the safety of any part of the study, do not hesitate to contact FEHNCY (by email, Facebook, phone) and study coordinators and principle investigators would be happy to answer your questions.

Q. What is being done with my hair, urine, and blood samples?

A.

While the clinic is in the community, we will measure blood hemoglobin (marker of anemia), white blood cells and neutrophils (markers that the body is fighting infections), blood glucose (marker of diabetes) and hair mercury levels (marker of mercury exposure from the consumption of predatory fish that are high in mercury). Blood and urine samples will be shipped to certified laboratories to examine participants’ nutrition and health status, and exposure to contaminants, including those from metals and exposure to cigarette smoke and cannabis products. For a complete list of contaminants and nutrients, click here.

Unused hair will be returned to participants at the end of the clinical appointment. Remaining blood and urine samples will be securely stored in freezers located at the Centre de recherche du CHU de Québec – Université Laval, for the completion of all the analyses proposed in the study. All samples will be identified by a code number only, and the participant’s name will not appear on them.

Q. If something abnormal comes back from my child’s results, what will the FEHNCY study do?

A.

In case of abnormal results, they will be immediately shared with the child’s guardian and with a local health professional who will ensure a clinical follow-up.

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Housing Conditions and Indoor Air Quality

Q. What will housing inspectors be looking for during the home inspection?

A.

*note: this component has been modified under COVID-19 restrictions; housing inspectors will not be entering participants’ homes.

The purpose of the housing inspection is to understand the influence of indoor air quality and housing quality on the respiratory health of First Nations children and youth. Each participating household will be inspected for mould and any structural conditions.

Q. Why are you collecting dust samples from my home?

A.

Dust samples will be collected and analyzed for contaminants that can increase the risk for asthma and other respiratory illnesses.

Q. What will the Indoor Air Quality (IAQ) monitor measure and record?

A.

The IAQ monitor will measure the level of these contaminants in the air inside the home:

carbon dioxide (from breathing), nitrogen dioxide (from the burning of fuel), PM2.5 or atmospheric particulate matter (from power plants, cars, burning wood). At the same time, the monitor will record the relative humidity and the temperature. It will be left in the home for 5 days and then picked up by the Community Researcher.

Q. What will the Volatile Organic Compounds (VOC) monitor measure and record? What are VOCs and how do they affect my health?

A.

The VOC monitor will be installed in 20 randomly selected households to measure volatile organic compounds. VOCs are released as gases from many household products such as paint, varnishes, wax, cleansers, disinfectants, air fresheners, dry-cleaned clothes and pesticides. Exposure to high levels of VOCs can result in symptoms ranging from irritation of the eyes, nose, and throat to damage to the liver and kidney or even cancer. To date, little information is available regarding VOCs in First Nations Communities.

Q. What is radon and why should I be concerned about it?

A.

Radon is an invisible, odourless and tasteless gas that comes from the breakdown of soil and rock that is radioactive. When radon is released in enclosed spaces, it can accumulate to high levels and over time, radon exposure can result in health risks such as lung cancer. FEHNCY will use the best quality monitors to measure radon levels in homes over a 90-day period.

Q. What will be done if levels of contaminants in my home are too high?

A.

An individual housing report will be given to each participating home indicating if measured contaminants are of immediate hazard to health or if there are any possible long-term implications to low-level exposure. In cases where there is a risk to a participant’s health and safety based on indoor air quality results that are unsafe for inhabitants, it will be necessary to inform the participants and other key people (such as the director of housing) to facilitate follow-up actions. The report will also include some suggested simple and practical ways to reduce contaminant levels or improve indoor air quality in the house.

Before the beginning of data collection, a detailed follow-up action plan will be developed with each Chief and Council as well as Health Canada (who have agreed to support radon remediation in homes of participating First Nations when levels exceed the guidelines).

Results

Q. Will the results be accessible to all members of the community?

A.

A presentation will be held in each First Nation to communicate community-specific results. All members of participating First Nations will have access to a summary of the results, and a complete written report including summary of all the data collected, will be provided to representatives (Health Director, Chief and Council, community advisory committee, etc).

Q. If I participate, what results will I get back?

A.

Participating households will receive an individualized report of all of the measurements that were taken during the home inspection, with an explanation about what each measure means, and what to do if the readings are above recommended values. Radon levels that are too high will be shared with Indigenous Services Canada with permission from the head of the household, and measures will be put in place to correct the problem. See section on radon above.

Participating children and youth will receive an individualized report of all of the measurements taken in the mobile clinic. These reports will be delivered by a FEHNCY team member, who will give an explanation of what they mean, and what to do if there are any concerns about the results.

Q. If I participate, will my information be made public?

A.

Each participant’s privacy will be maintained at every step and no personal information will be included in the report. When data is returned to the community, identifying information such as age and gender will be removed so that information cannot be linked to your child or your household.

Q. Will the regional reports be publicly accessible?

A.

Results from all participating communities within the same Assembly of First Nations (AFN) region (BC, AB, SK, MB, ON, QC-Labrador, Atlantic, the Yukon and NTW) (see map) will be combined into a regional report. Regional reports will not include community-specific data, out of respect for community ownership. Unlike the community reports, the regional reports will be available to the public.  Regional reports will be provided to each participating community, so they can compare local community results with other First Nations in the region. Regional reports will be available on the FEHNCY website. They will be representative of all First Nations in the region, even if those that were not randomly selected to participate in FEHNCY.

Q. Where should I go if I have more questions?

A.

By email: Contact FEHNCY@uottawa.ca for further questions

By phone: 613 562-5800 ex 7214

Message us on Facebook: facebook.com/FEHNCY.firstnations/

Study Measurements

AT THE CLINIC:

Q. What measurements will be taken from my child?

A.

Each participating child who consents will have the following measurements taken:

  • Height (to measure growth and development)
  • Weight (to measure growth and development)
  • Waist circumference (to screen for possible weight-related health problems)
  • Body composition (to measure their body’s percent muscle and body fat)
  • Blood pressure (to measure the risk factor for heart disease and diabetes)
  • Lung function (to measure how well their lungs are working, test for asthma)
  • Urine (to measure for environmental contaminants)
  • Hair (to measure mercury exposure; high levels can affect the brain and other organs)
  • Blood (to measure how well the body is working, test for diseases such as diabetes, test for exposure to contaminants)

 

* Blood, urine and hair samples will also be used to examine your child’s exposure to cigarette and cannabis products. These samples will never be used for genetic testing, nor provided to any commercial or pharmaceutical companies.

Q. What if we want to complete the survey but not provide hair/blood/urine samples?

A.

Your participation with your child in this study is on a voluntary basis. If you agree to participate in the project now and wish to withdraw later, you can stop at any time. What you decide will not cause any prejudice to you or members of your family. If you or your child decide to withdraw from the study all together, all your collected information will be permanently deleted from our database and samples will be disposed of.

FROM THE HOME:

Q. Why does my house need to be inspected? What will they be looking for?

A.

Housing inspection is a part of the study to understand the influence of mould fragments inhalation and poor indoor air quality on the respiratory health concerns of the First Nations children and youth. Each household will be inspected for mould and any structural conditions.

Q. Why are you collecting dust samples from my home?

A.

Dust samples will be collected and analyzed for endotoxins, dust mites and 1,3-beta-D-glucan, all risk factors for asthma and other respiratory illnesses.

Q. What will the Indoor Air Quality (IAQ) monitor measure and record?

A.

This is a real-time monitor that will measure the level of chemicals in the air (CO2, NO2, CO and formaldehyde levels) in the home. At the same time, the monitor will record the relative humidity and the temperature.

Q. What will the Volatile Organic Compounds (VOC) monitor measure and record?

A.

The VOC monitor will be installed in randomly selected households to measure volatile organic compounds, which are found in products used to build our homes and in personal care products that we use.

Results Dissemination and
Data Ownership

Q. Will the results be accessible to the local community?

A.

A presentation will be held in each First Nation to present community-specific results after complete data entry and analyses. A written report including summary of all the data collected will be provided to the representatives.

Q. When the community gets the data back, will they see my information if I participate?

A.

The participants’ privacy will be maintained in every step and no personal information will be included in the results.

 

All participants will receive a report detailing the findings from their individual home inspection and air quality measurements. Participating children will receive a summary portfolio of their individual clinical results.

Q. If something abnormal comes back from my child’s results, what will the FEHNCY study do?

A.

In case of abnormal results, they will be immediately addressed and clinical follow-up will be performed by the local health professionals who will be involved in the FEHNY Mobile Clinic activities.

Q. Who owns the data? Are you operating under OCAP principles?

A.

The FEHNCY follows OCAP principles regarding ownership, control, access and possession of the data collected from each community. Your community is considered the owner of all data collected from your community and will be provided with a copy of the anonymized dataset upon completion of the study. In the anonymized dataset, all information that could be used to identify participants (directly or indirectly) will be removed. The data will be kept in a secure manner in a locked room at the University of Ottawa until 10 years after the completion of the study (estimated in 2040). The First Nations Information Governance Centre (FNIGC) will securely store a backup copy of the anonymized dataset on behalf of your community and will not use or provide it to anyone unless explicitly directed to do so by your community.

Q. Will the regional reports be publicly accessible?

A.

Results from the six participating communities will be combined into a regional report.  Unlike the community-reports, the regional reports will be available to the public.

Regional reports will be provided to each participating community, so, they can compare the local community results with other regional First Nations.

Compensation

Q. How will the participants be rewarded for their time and commitment

A.

After each visit, the child, the caregiver and the head of the household will receive incentives for their time and commitment.