October 12, 2022

There is little data about the experiences of caregivers in Nunavut. To better understand the needs and challenges of those who provide care, the Canadian Centre for Caregiving Excellence is investing in a cross-territory mapping exercise. The project is being led by the Nunavummi Disabilities Makinnasuaqtiit Society (NDMS), Nunavut’s only cross-disability organization.

Nicole Diakite, the executive director at NDMS, said, “Our hope is to determine how caregiving is currently rolled out across the territory and what caregiving means to people with lived experience, families and community members. We want to determine what resources people need to be successful in providing care and what resources are lacking.”

To collect this information, NDMS has prepared online surveys for caregivers and people living with disabilities. They are also hosting traditional sharing circles in all 25 communities across the territory to ensure participation is equitable and inclusive.

Infusing research with Inuit knowledge

The mapping exercise is an extension of the qualitative research project NDMS is conducting in partnership with Accessibility Canada, “Advancing Accessibility Through Inuit Societal Values.” This study is guided by Indigenous research methodology and aims to better understand federal accessibility standards and how they interact with Inuit Qaujimajatuqangitn (IQ) values.

According to Diakite, “IQ values translate to ‘that which are long known by Inuit.’ It is understood as traditional Inuit knowledge expressed by Elders as beliefs, laws and knowledge. IQ is the foundation of Nunavut’s expectations of oneself and others. It was developed to communicate the Inuit worldview to accurately reflect knowledge, values, social organization, decision making processes and culture.”

NDMS has assembled an advisory committee with representation from every region in Nunavut to oversee the project. The committee is responsible for reviewing all materials to ensure that all aspects are culturally relevant and community driven.

Turning information into advocacy

The project offers an opportunity to gain baseline information about the lived experiences of people with disabilities, their caregivers and Elders, including what is working well and what challenges and barriers they face.

Due to fragmented medical infrastructure and services in Nunavut, many residents with medical care requirements or complex disabilities must leave home to access care in southern provinces, which can be traumatic for both the person receiving care and their caregivers.

“There’s a lack of resources to support training and build capacity for caregivers to remain in their communities and support their people, families, friends and Elders,” said Diakite. “Individuals who are sent out of the territory are removed from their culture, from their language, food and family, everything that they know and love.”

A photograph of caribou meat being cut using a traditional ulu.
A photograph of caribou meat being cut using a traditional ulu.

The information collected from the study will support advocacy efforts to provide additional supports for caregivers and to keep people in their homes and communities – an essential component of IQ values, and a step towards reconciliation.

How to participate

Service providers in Nunavut can participate in the study by completing this survey and attending their local sharing circle.

To find out when NDMS will be in your community, contact [email protected].

About NDMS

Nunavummi Disabilities Makinnasuaqtiit Society, also known as NDMS, is the only cross-disability organization in Nunavut. We provide support to people across the lifespan from infants to Elders.

NDMS developed out of grassroots community-based action. In 1999, Nunavut Tunngavik Inc. provided support, in the form of office space and staffing, to a small group of individuals who sought to bring awareness and justice to people living with disabilities in Nunavut. In 2005, NDMS was incorporated as a society, and became the representative organization for people living with a disability in Nunavut.