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Seeking Siblings of Persons with Developmental Disabilities

Project end date: Ongoing project

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My name is Maren Rogers; I am a Master of Arts in Counselling Psychology student at Adler University and currently working on my thesis.

I used to work with families to support children with special needs. My work showed me that typical siblings care deeply about their sibling’s well-being but sometimes struggle themselves. There is little research on the resilience and strengths of typical siblings. This inspired me to ask typical children about their experiences.

This research is about how typical children coped well*, with taking care of a sibling with a developmental disability*. This study asks typical siblings to look back on childhood and share what was helpful, unhelpful, and what would have been helpful. The aim is to ask about siblings’ experiences to inform professionals on how to help.

*Coping well means that something challenging happened (in this case, sibling caregiving), and you either took action or changed your thinking to tackle it. The outcome was that you and maybe the people around them were better off.

*Developmental disability in this study means that the person:
1) Has a cognitive impairment.
2) Struggles with daily living tasks.
3) These challenges started before 18.
This includes diagnoses like Autism Spectrum Disorder (ASD), Fetal Alcohol Spectrum Disorder (FASD), and Down Syndrome.

To be eligible to participate:

  1. You live in Canada
  2. You are comfortable speaking and reading English about this topic
  3. You are a (ie. You don’t have a developmental disability but grew up with a sibling who does)
  4. You have a sibling with a developmental disability*
  5. You lived with your sibling for at least 50% of the time from the age of 0-18
  6. You coped well with at least 50% of the caregiving tasks you did for your sibling with a developmental disability while you were children or teenagers.
  7. You are comfortable speaking about your childhood and teenage caregiving experiences (This may include experiences that took place during the COVID-19 pandemic)
  8. You are willing to volunteer up to 3.5 hours of your time in total over the course of 1-7 months. This includes the 20-30 minute screening call, then a 1-2 hour interview, and a 30 – 60 minute follow-up.

Eligible participants can enter a draw to win one of four $25 Amazon or Indigo gift cards!

Researcher Contact Information: My name is Maren Rogers, and my e-mail is [email protected].

Please contact me for more information and to participate.

The Adler University Research Ethics Board has approved this study. I am being supervised by Dr. Debbie Clelland, e-mail: [email protected].