Siblings Canada

Siblings Canada, an initiative of CCCE, raises awareness of the critical role siblings play in creating robust and responsive systems of care for people with disabilities.

While our experiences as siblings are diverse and profound, our perspectives, needs and ideas are often overlooked. Siblings Canada exists to ensure that Canadian siblings are recognized, valued and supported.

For most siblings, disability including intellectual, developmental, physical, neurodiversity, mental health, chronic pain and illness, acquired brain injury or medically complex pediatric illness has been a normative and formative experience.

Although our role may change over our lifetime, it is a critical contribution to a robust and responsive system of care for people with disabilities. Siblings Canada serves as a source of relevant knowledge, learning and resources to support, empower and inform siblings so they can move forward in their changing role with confidence and strength.

Siblings Canada welcomes siblings-in-law, cousins, and other second-generation caregivers.

Supporting and empowering siblings in their changing roles as caregivers

Siblings Canada is focused on making an impact in meaningful ways, including:

Advancing national awareness of the important role siblings play in the long-term well-being of their family members with disabilities
Contributing to research, knowledge and policy on siblings, caregiving and disability

Bringing adult sibling caregivers together to share their experiences and learn from one another
Building the capacity of social service agencies and other disability-focused organizations to better engage and support sibling caregivers

Explore the Siblings Canada Learning Hub!

The Siblings Canada Learning Hub is a curated collection of free resources that support siblings of people with disabilities to build their knowledge of relevant topics, including financial security, mental health and communicating with family. Check it out today!

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Virtual events

Our virtual events bring together sibling caregivers, experts and other stakeholders to work through relevant topics as mental health needs, effective communication with family and building financial security.

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Sibling Peer Mentorship Program

This program matches adults who have siblings with disabilities with the goal of building supportive, one-on-one relationships that are centered around a deep sense of understanding which comes from having similar lived experiences.

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Research, Reports & Other Resources

To date, there has been limited research on Canadian adults who have siblings with disabilities. To address this gap, Siblings Canada partners with organizations and institutions to build our collective understanding of the diverse experiences, needs and challenges of sibling caregivers. This research informs the resources we create, including our guides, online courses, presentations and events.

With support from the Canadian Centre for Caregiving Excellence (CCCE) and Siblings Canada, a research team from Western University is completing a project to learn about the experiences of the siblings during periods of care transitions and how they imagine their futures together by highlighting recurring themes and shared values.

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In 2018, Siblings Canada conducted an online survey to better understand the experiences of adult sibling caregivers. The survey was completed by hundreds of people and set the groundwork for a paper we co-authored with the Centre for Addiction and Mental Health (CAMH).

The study was published in the Journal of Policy and Practice in Intellectual Disabilities in April 2020 and can be found online.

Read our study

In 2021, Siblings Canada conducted an online survey to identify the experiences and needs of adult sibling caregivers who deal with the financial and overall well-being of their siblings with disabilities. Over 350 siblings from across Canada responded to the survey; our infographic highlights what we learned.

If referencing the data contained in this infographic, please be sure to cite Siblings Canada as the source.

View our infographic

Since the onset of the COVID-19 pandemic, Siblings Canada has made efforts to understand the experiences of adult sibling caregivers. From May to July of 2020, in collaboration with the Centre for Addiction and Mental Health (CAMH), we conducted an online survey exploring the specific concerns of sibling caregivers, their emotions and the resources they found most helpful during the pandemic.

Later that year, the Journal of Intellectual Disability Research published a paper on our findings titled, Exploring the experiences of siblings of adults with intellectual/developmental disabilities during the COVID-19 pandemic.

Read our pandemic report

The loss of a brother or sister with a disability can be profound.

This document provides advice and tips to support you through this challenging time and we hope you will find it helpful.

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In late 2020, we sent a follow-up survey to further understand the sibling caregiving experience and see what had changed since the pandemic started. Sixty of the 91 siblings from the original survey responded; they agreed the pandemic continued to weigh heavily on their families. Sibling caregivers are still experiencing high levels of stress, worry and sadness.

To learn more about our findings, review our follow-up report.

Read our follow-up report

Siblings Canada is currently updating our e-book sibling caregiver stories so they can be widely shared.

Stay informed

Books can be a way for siblings to feel less alone in their experiences. It can also be helpful for other family members as well as service providers to get a better understanding of the life of siblings.

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Supporting organizations to support siblings

Many siblings with disabilities live in poverty. With funding from the federal government and in partnership with PLAN, Siblings Canada is leading a multi-year project to help sibling caregivers build long-term financial security for—and with—their siblings with disabilities.

As part of this work, we are looking to connect with sector stakeholder groups from across Canada. If you are interested in learning about how your organization can better engage and support sibling caregivers, reach out to us at [email protected].

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