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From time to time, the Waterloo Region Family Network (WRFN) is asked to distribute information on behalf of third parties. WRFN provides general information to self-advocates and families of children with special needs. The information provided on this website is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider. WRFN is not responsible for any information or services provided by third parties. You are urged to use independent judgment when considering any resource.



Research Project

My name is Tetyana Ali, I am graduate student from Wilfrid Laurier University in the department of Kinesiology and Physical Education. I am currently exploring the lived experiences of caregivers and service providers of developmental disability in Ontario. I am also exploring disability policy and caregiver policy and how it affects caregivers in Ontario.

To achieve this, I hope to conduct one-on-one semi-structured interviews with primary informal caregivers, as well as executive directors of disability organizations/networks. If this is something you are interested in participating in, please let me know!

Due to the pandemic, the interviews will be conducted online via Microsoft Teams or over the telephone. The interviews may take between 60-90 minutes to complete.


Executive Director Criteria:

  • Currently employed by an organization that provides supports for individuals with developmental disabilities (ages 4-25)
  • Must have experience working with individuals with developmental disabilities for at least 12 months


Caregiver Criteria:

  • Caregivers of children/young adults with developmental disabilities
  • Could range anywhere from ASD, Down syndrome, cerebral palsy, Spina bifida, FASD, muscular dystrophy, intellectual disabilities, anything that has to with development can be included!
  • Caregivers must be primary
  • Those who are responsible for majority of care duties
  • Currently live or have lived with their care recipient within the last 12 months
  • Must have lived with the care recipient for at least a year
  • Caregiver must be informal
  • Unpaid for the care they provide
  • The caregiver must live within Ontario

Progression of the study and approximate time commitment:

  • Fill out a background questionnaire (approx. 5-10 min)
  • Fill out an informed consent form (approx. 5-10 min)
  • One-on-one semi-structured interview (approx. 60-90 min) over either MicrosoftTeams or over the telephone
  • All you need for MicrosoftTeams is google chrome and a webcam, I will send over more instructions if you choose to participate
  • If you allow it, the interview will be audio-recorded. This will allow me to transcribe the interview afterward for my analysis. I will be the only one to have access to this recording
  • You may still participate in the study if you decline audio-recording
  • Transcription check: after about 2 weeks' time I will send over a transcript of your interview for you to look over (approx. 10-15 min)
  • Here you will be able to change, add, or remove any information from the interview that you would like. I will not keep anything you wish to remove
  • Analysis check (OPTIONAL) around March 2021, I will send over the findings to you, if you wish you will be able to review these and give your opinion as well

For Research poster, click here.


Leah Bowman at 1:46 PM
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